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Tuesday, January 21, 2014

And those times quickly amount to evidence of a profound lack of access, inclusion, acceptance, and equality. Words are not just words.

Yesterday Lydia Brown, who blogs at Autistic Hoya, started a hashtag on Twitter called #abledpeoplesay. It quickly garnered the attention of many people with all different kinds of disabilities, a few allies, a few abhorrent bots (that's a good sign in terms of trending popularity), and eventually of "abled people" some of who felt the need to criticize it, its aims and its purpose.

I think I know what Lydia meant to do with it, but in reality I can only assume (all right, I'm just guessing). I think she meant to give a place to disabled people to speak about their everyday experiences of tiny, as well as some earth-shatteringly huge and devastating, acts of discrimination. I think she meant to make people coming across the tag to check themselves, their actions, and their attitudes, but also, and this is still me assuming here, she probably wanted to create a place for people to not feel alone in being subtly and not so subtly oppressed. By society, by complete strangers, by their families, and sometimes by themselves.

But it also made me think more about some things that I have quietly and not so quietly been turning over in my head for some time:

Whose responsibility is it to work for change in society, to work for acceptance, inclusion and equality?

What makes a self-advocate?

Who defines what is exclusive, hurtful, or offensive towards a minority? (I know this is kind of an easy one, and there really only is one right answer- the minority in question - but I'm including it for teaching purposes :-D You'll get that "joke" later)

And

Whether "You'll catch more flies with honey", "Educate, don't castigate," and "Don't just complain, do something about it" aren't just ingredients in a soup of tone policing in lieu of actual counterarguments, silencing, and ways of interjecting yourself into a debate not about you instead of actually listening? (Yes they are, I'll tell you that right now, but I'm including this to make a point in more than 140 characters.)

A DUTY to change a resistant society

As I watched the tweets accumulate on the tag there were a few criticisms regarding what the tweeters termed as a "campaign". Someone tweeted "Disappointed by the #abledpeoplesay movement. Is this an educational campaign?" assuming that this was a concerted effort by members of a movement to educate. That this was about them (us), the abled people, and not about the people tweeting their frustrations, their hurt, their diminishing and dehumanizing experiences (and in my case a few choice "well-inteneded" comments about my own child that I hope she never has to hear when she's old enough to understand their true ableist weight) to each other and perhaps to an audience that was willing to do the most important thing a potential ally could ever do: listen to the member of the oppressed minority and not elbow themselves into the spotlight or educate the oppressed minority on how "best" to do things.

The initial criticism was followed with "[The hashtag] comes across as angry and sarcastic." as if that was a bad thing, something that should be avoided in the noble fight of the noble people with disabilities for noble and forgiving freedom, in their noble wish to gently educate those who just mean well. Eye roll. If that comes across as angry and sarcastic then at least I'm on point.

And in case you were wondering how disabled people should go about their lives the tweeter offered this last bit of helpful wisdom criticism: "I prefer to shock with intelligence vs shame." Because when someone undermines your clinical depression/ your insistence that autism isn't an epidemic and there's no need for a cure/ your right to identify yourself by X instead of Y/... or some dehumanizing tidbit of curiosity-gives-right-to-personal-information just because (Why? Because they haz opinionz on thingz? Other post…) there's nothing like sending them to that massive database that has it on file that people with disabilities are people too and explains it all nicely and politely to a person who is willing to listen and able to empathize.

Engage more sarcasm (and maybe a pinch of anger, but I'll be honest most of that is just my delightful personality):

Because people with INTENTIONS have a RIGHT to know and be educated ON THEIR TERMS and WITHOUT BEING OFFENDED in any way, and it is up to THOSE WITH DISABILITIES as a movement to MAKE THAT HAPPEN, to figuratively RAISE THEMSELVES out of OPPRESSION as long as they're NICE and POLITE about it.

Big EYE ROLL (These are making my sockets ache). I mean what could you possibly learn by reading a slew of things that you've lobbed at disabled people without thinking and learning how much you've hurt and violated them and their existence, anyway? Nothing, I tell you, nothing! There's no way you'd know more about what not to say after that. Nope. Never.

And then again, it shouldn't be up to the abled people to try to learn about inclusion, acceptance, or equality. I mean, simple 30-second google searches on any of the above turn up absolutely NOTHING. Life's just too complicated to do anything for anyone but myself, right?

She doesn't understand that she has Down syndrome. To be honest, I don't think she understands that I have the magical ability to tell her that "Ice cream is all done. No more." even when there actually is more in the freezer. Because she is a toddler. She doesn't yet understand what being disabled will mean for her life. She's more interested in trying to figure out which button turns on the television on the remote (and how to get to that remote on top of the book case).

There aren't any new pictures of her in which she is identifiable on this blog (or really anywhere apart from closed, familiar communities) because she hasn't told me that she'd like to be used in a "campaign", as a tool for a movement to do with advancing the causes of those with Down syndrome. If she one day tells me that she'd like to be out there self-advocating with whatever tools she'd like to use, she's welcome to it (Perhaps like Lydia Brown or Eric Matthes, she'll become a force to be reckoned with?), but I can't make that choice for her. She is not an awareness campaign, nor is it her responsibility to educate anyone. Life cannot be moving from a teachable moment to the next, simply focusing on intent when impact is what we end up living with. And even then, without aggressively focusing on the foundation that allowed for a good intention to go so astray as to become a violation of someone's full personhood instead, all we're left with is a sad "sorry you're offended" or in Twitterspeak: #SorryNotSorry.

Advocating is not even my responsibility. It's my desire. It's what I feel driven to do. Not just because of my disabled kid, but because I want to work for a world that is better for everyone, more equal, less cruel, less arbitrarily dismissive and silencing. A world in which more people are less focused on themselves and more focused on others and how their existence affects the existence of others.

But I choose to do that. I am privileged enough to be making that choice. I am privileged to be able to decide exactly in which way, when, and where I wish to advocate. I can choose to try to represent and I can choose to keep quiet. In that I am privileged.

And while it hurts me to my core that my child is not often seen as an equal or worse, I can't speak as her. I can raise her, guide her, give her kickass tools for badass fights for equality, and advocate for her while she takes some time to enjoy her childhood, I can't ever be her, or even know what it's like to be her.

But I'm trying to listen. Let it sink in. Really sink in, instead of looking on as we, the abled people, abled parents, decide who, what, how, when, and where, for this movement.

I mean, really let it sink in.

This is NOT about me. Not everything is about me.

****

Trying to find out who the real architects of change should be.
Join us at Down wit Dat.

Saturday, January 18, 2014

If I see another article, meme, post, essay, poem, or a wannabe PSA that focuses on how hard life is for Special Needs Parents (apparently, this being a SNP is a thing and we are all the exact same and our struggle, because that's what our lives are, is the exact same also) and how you, yes you, the person who is not in this club of Stepford parents, can help us by "really listening", "trying to understand and empathize", and baking us casseroles or offering to do our laundry, I will scream.

Seriously. I will go apeshit on a bottle of wine and cry myself to sleep after yelling unconstructively on various social media (example: Blogger).

I am not a member of a marginalized and oppressed minority, my kid is.

You probably think I sound ungrateful, some will say how divisive and dismissive of others' experiences I'm being, but hell: I'm never going to like being shoved into a box and made into someone's cause. This "we need to validate everyone's truth" stuff posing as dogma goes both ways, and I've had enough.

Shit.

My kid doesn't deserve to be shoved into a neat little "this is how someone with Down syndrome is and will be," so why would I ever want stuff going around about my parenting identity that dismisses my actual reality and puts me in some corner to suffer under stares? Why would I want stuff going around about me that diminishes my kid, her person, her reality and her needs, and only looks at disability as something a family experiences, that happens to a family, something that's all about parents and siblings?

Fuck that shit.

This morning, as I sat on my couch, surfed Twitter, sang along to The Beautiful South's Don't Marry Her and El Chapo de Sinaloa's Para Que Regreses and tried to figure out whether my feminism was enough and whether it was okay for a feminist to unabashedly love such pieces of music, and just plain lived my average life, while the Babe danced like a banshee on one mother of a sugar high, I realized a few things.

1. I don't suffer. We don't suffer. We are not having a hard time because of having Down syndrome as part of our everyday.

2. I can fucking do my own laundry and bake a mean fucking casserole, if I want to. With and without bacon.

3. I want you to listen because I want you to understand why pitying me and a few other mean mothers I know will just make us meaner and louder. And sweary. And why ungrateful might just take on a new dimension if crap narratives keep getting this much fucking airtime.

4. Perpetuating a narrative about parents and caregivers of disabled people that focuses on hardship and need for compassion will hurt MY kid in the end. And I never want her to think she is or has ever been a burden on anyone. Especially when she is the biggest source of joy, love, goodness and fucking awesome sauce for me and the Viking I've ever encountered. So stop shitting on my kid with your assumptions of grief. Stop it.

5. What I need from you is for you to make my kid's access needs your access needs, for you to fight for inclusion and acceptance. What I don't need from you is emotional support because my kid doesn't have proper access to the same opportunities and experiences her typically developing peers have.

6. There's no way I can be nice or constructive about this. I'm at my wits end and conjuring up sarcastic memes and screaming into the wind are no longer enough.

Fuck you, pity party. I have lots of love, plenty of awesome, several suspicious casseroles in the freezer, and plenty of clean clothes (No mom, like for real). Deal.

Sunday, January 5, 2014

To me, on a personal level, the answers come easy: The Babe, The Viking, my parents, my siblings, my friends and comrades, reading, steaming hot coffee in the morning, good and witty comedy, kindness in myself and others, sun glinting off waves, drinking wine in good company, new snow, feeling heard, a good run, feeling trusted, gaining knowledge, and being myself. In a nutshell.

But what about in a more collective sense? On a societal level?

I stumbled upon an article about this guy's Happiness Project. (It's in Finnish and can be found here should you feel inclined to challenge Google Translate once more, although Finnish has so far proven rather an insurmountable task for it). In it a Finnish expat living in Switzerland writes that "joy and happiness depend more on one's attitude and personality than the surrounding reality,"* that since he has his "basic building blocks of happiness together (health, job, and family)"* he is in grave danger of being sidetracked into a life in which he'll find it hard to experience happiness from everyday things and in which "food will have to be mind-blowing to taste of anything, every holiday shot will have to be photoshopped for it to be shown to the neighbors (or shared on social media). A life in which happiness can only be found by screaming out one's hurt by denigrating others on internet forums."* Sometimes he has the urge to shout at those who complain over what he deems as nothing: "WHY ARE YOU COMPLAINING WHEN EVERYTHING IS ALL RIGHT FOR YOU!"* So he's recommitting himself to finding joy in small things, at least once a day, a hundred times, and would like for you to do this too, as well as documenting it or not somehow. He wants you to stop complaining over nothing and start finding joy in seemingly insignificant things.

I don't wholly disagree, and I don't doubt that what he describes is very true and valid for him and his individual circumstances. I also command him for looking in and attempting to chance a tune he does not want to hum to. Good for him.

However, there are aspects of his article I'd prefer framed differently, delved more into, questioned, challenged, researched, and not presented in a way that to me seems very much like building on unquestioned truths, practically facts.

Every other person: "So, do you wish for a boy or a girl?"
Expectant parent: "We don't care, as long as he or she is healthy."

I think I even linked to a Brad Paisley song about such thoughts. And then I went on to say that my kid will never be considered quite healthy. A statement which I will now amend, but not really. I know Babe and others with Down syndrome are not sick by virtue of having Trisomy 21. They have 47 chromosomes, a chromosomal variant, and that's it. End of story for me health-wise. However, when expectant parents utter the word healthy in the above scenario they don't mean "I hope the kid doesn't come out and turn out to have the flu or a stomach bug," they mean "I hope the kid does not have a chromosomal abnormality, be missing a part of the brain, turn out to be Autistic, have extra limbs or be missing some, or some other stuff that scares the bejeezus out of me."

So whenever I see "having my health" or "being healthy" listed as basic building blocks to having a good and happy life and being able to appreciate what you have, several things spring to mind. Not in the least my honest wish that my kid can one day say "My impairment is a source of joy, happiness, and connection for me." Or use whatever lingo will come to replace such a limiting term as 'impairment'.

I really mean that.

No, I'm not joking, in denial, or grasping at straws. I'm only asking for you to take your worldview, turn it completely upside down and then shuffle it some, drop a few hundred pieces and add in a thousand new ones. Or at least try. I want to question and challenge what "having my health" or "being healthy" have come to signify in our society, health as morality, achievement, healthy as the norm, as the default, and "being healthy" as a myriad of, often contradictory, aspects.

Then do the same for job and family. For achievement. For poverty. Then for intellect.

Then for cancer. Nope, still not being unreasonable. I know cancer is a horrible thing, but I also know that having cancer or having had cancer does not make a life less worthy or have to mean the disappearance of opportunities for happiness. I believe cancer and happiness and joy can all coexist, if need be. Much like sadness and joy, or anger and contentment. I don't want to be glib about cancer or trivialize the issue (and if it seems so to you please leave a comment and I'll rethink it), but I do think that a world in which cancer does not rob all happiness is possible, even when it results in a person's passing. It seems to me that this has more to do with attitudes about happiness than cancer.

To suffer is subjective. And at least I, in my previous life before Babe, had completely misunderstood suffering and its implications to a person's existence. Still, every day, I learn more and continue to grow my understanding. I also have a long way to go.

But I'm up for challenging and questioning and analyzing in order to be better at others. To discover the systemic wrongs that are mirrored in our thought patterns and that effectively comprise a "surrounding reality" that disables happiness for many. Something that cannot be removed simply by flipping a switch in oneself.

Happiness as attitude

The Happiness Project I mention above is not the first of its kind I've come across. It seems that many New Year's resolutions this year have focused on being more happy, being more accepting, being kinder to others but especially to one's own self. I think that's great. It's amazing that many people are choosing love and light and acceptance, and I sincerely hope it spills over into the world at large. I also personally choose love and light and acceptance, but with a healthy side of greasy fries, anger at injustice, and prolific outrage. Because I can. I'm privileged enough to do so.

Being happy is not always a choice one can make. And sometimes suggestions to "stop and smell the roses" or phrases like "the only disability in life is a bad attitude" are downright insulting. (Note: The latter phrase especially if superimposed on a photo of a disabled person. Read more about inspiration porn here.) I'm naturally referring to still very stigmatized conditions such as depression, but also to having the right to complain, of having the right to have your dissidence known, having your outrage felt and act as an agent of change, yet not having all of that seen as you not being happy or capable of happiness, joy, or love.

In my opinion, happiness and being happy should not mean you should only see the positive, only say good things, only speak of love and goodness, to look for the bright side, to not dwell, or to keep your mouth shut if you have nothing positive to say.

No.

Silence isn't always golden. At least not for me. Someone's circumstances, perceived by others to be "all right" should not mean others then have the right to decide one is complaining about nothing. Or just complaining, lashing out, choosing to be unhappy due to having somehow become so complacent that only hurting others will bring joy. This last part is a leap I have to admit I don't fully comprehend the logic behind, and I'm wondering whether there really is a cause-consequence connection between not having hardships and not being able to enjoy the small things, or whether lashing out actually brings joy to anyone. I'm not sure the "hardships make you appreciate what you do have more" is or should be so easily invertible. I do know one thing though: catharsis is a thing, and not one I take lightly.

Maybe sometimes happiness and joy just are, just exist. Are felt briefly, or are the foundation to your being simply because that's how your brain is wired. Maybe your brain is wired so that you don't spend much time putting things into categories like 'happiness' or identifying parts of your life as those that bring joy as opposed to those that bring anxiety and despair. Maybe you have bigger, or more colorful, or many very small fish to fry than trying to locate your internal happiness trigger and reset it.

Perhaps happiness doesn't matter, and doesn't need to matter. This shouldn't mean that you're somehow living your life wrong, or have been pushed to a sidetrack that's not where you were meant to be.

I've spent lots of energy convincing people that my child, because of her having Down syndrome, is not always happy. And that's the truth. Her being perceived as happy often means that the person behind the perceptions is drawing on a stereotype, justifying my child's existence in the world and what's there to be read between the lines is "you have a lesser, more simple child, a child not capable of great achievements which is how we measure worth, but at least she'll bring warmth and comfort and an angelic joy into the world with her sunny, all-loving ways."

For her, happiness is not a choice in many an understanding, it's a qualifying attribute imposed on her by "surrounding reality" and used to justify her existence.

Privilege

I'm aware of the overwhelming privilege in my life to be able to dissect and ponder all this as I've done. I try to be very aware of my various forms of privilege as the absence of a multitude of shit other people, less privileged than I, have to deal with on a daily basis. So, rather than being in the possession of a set of blocks that should lead to a happy life as long as I choose to be "in the moment" and "find joy in everyday" I try to understand that our society is built in such a fucked up way that the most privileged existence is seen as the average, the default, on which happiness can be stacked on or in which it should be found, while simultaneously that most privileged existence, possibly in lieu of experiences of higher to reach I guess, leads to attempts at finding joy by treading on those underneath, or just on others. And as for those not privileged, they're sources of inspiration should they be able to "find joy in their everyday" regardless of the lack of those necessary blocks for the right kind of happiness.

While I often experience happiness in my life, and if asked, would likely say I'm very happy in my life and in my choices about my life, does that even matter? Why should my working on my happiness and finding joy in small things mean anything at all? Why is happiness and trying to find it within yourself such an issue for us? How did happiness become something to be achieved, our moral imperative? In what kind of a society does it take effort to choose happiness, instead of letting it flow over you as any feeling would, while sometimes embracing anger, sadness, inability, or joy.

How privileged are we to even be having this discussion? How privileged are we to be able to comment on what should make us and others happy and how happy we should and could be?

***

I know this post has come out somewhat disconnected and rambly, but that's the essence of my happy right now, so I'm leaving it. Although, and I do want to make this absolutely clear, the Happiness Project article that I've linked to is by no means all that I take on in this post, it's merely what finally made sit down at the computer and lay down some of the thoughts I've been having about happiness, joy, disability, illness, shaming, internalized privilege, and more. Furthermore, I'm clearly not done, so please add your excellent thoughts on this all in the comments. That would make me so happy.

About Me

A child of a global world, originally from the land of Santa and cell phones, married to a bona fide viking, and attempting to raise a loud little life who has Down syndrome, all the while getting used to the US Pacific Northwest after many years in Latin America and Africa. Against all odds the kid's first words turned out to be 'mom' and 'book' instead of 'fuck' and 'no'. That may well turn out to have been my finest parenting moment ever.